Beyond data—listening to lived experience

Modern healthcare systems are built on measurement. We track waiting times, referral-to-treatment targets, survival rates and performance indicators. These metrics are essential and tell us whether services are efficient, timely and clinically effective. Yet some of the most powerful drivers of improvement do not originate from a dashboard—they begin with a story.

Cancer care is one of the most complex, emotionally charged and high-risk areas of healthcare delivery. A single cancer journey may span primary care, diagnostic services, multidisciplinary team (MDT) discussions, surgery, treatment, supportive services and palliative or end-of-life care. Along the way, patients navigate multiple appointments, handovers between teams and often life-altering decisions. Delays in diagnosis, unclear communication, fragmented pathways and missed escalation opportunities can have profound consequences.

A cancer patient’s story does more than recount a sequence of clinical events. It reveals what mattered most to them in moments of uncertainty. It highlights where systems worked well—and where they did not. It brings into focus inequalities, access barriers and communication gaps.

The question is no longer whether patient stories matter. It is how we use them responsibly, consistently and systematically to improve care.

From patient story to structured improvement

To create measurable impact, storytelling must move beyond powerful listening sessions. It must be embedded into structured quality improvement and safety culture.

At CMCA, patient stories are deliberately integrated into governance, learning and pathway redesign. Stories are shared across meetings, events, training sessions and improvement programmes. Rather than treating stories as standalone testimonies, they are used to strengthen systems thinking. Each story prompts structured reflection: where were the faults in the pathway? what safety nets failed or were absent? how did workload pressures or process design contribute? were there missed opportunities to escalate concerns and could this scenario happen in our service today?

This approach transforms storytelling from passive listening into active improvement. When patients see that their lived experience leads to tangible change, storytelling becomes partnership—not performance.

On 23 May 2022, CMCA invited its first patient storyteller to a team away day. Hearing a personal cancer journey directly from someone with lived experience had a profound effect. It shifted conversations from abstract targets to real human impact. Since then, colleagues across the Alliance have increasingly invited patients to share their experiences to inform pathway redesign and programme development.

Between 2022 and 2025, 73 patient stories have been shared. As a result, six significant changes have been implemented. These include improvements to the accessibility of diagnostic testing and the development of a patient engagement checklist for the pathology transformation programme. Other impacts are less immediately measurable but equally meaningful.

Stories often leave a lasting impression, influencing how leaders think about service design long after the meeting ends.

Empowerment through partnership

For many patients, sharing their story is both courageous and empowering. Storytellers remain fully in control of what they share and how they share it. CMCA offers multiple formats—written narratives, audio recordings, video submissions or in-person presentations—ensuring that individuals can choose what feels safest and most authentic.

One storyteller reflected:

“Oh my word, it's always so amazing to know people hear what I say and take it in.”

Another, a CMCA Patient Representative, shared:

“Sharing a patient journey can feel daunting at first, but the team at CMCA have been empathetic, kind and supported me every step of the way. Knowing that my words can help others in some way gives me hope and helps me to heal.”

Storytelling has also opened further opportunities for patient involvement. Some storytellers have joined project groups, contributed to service redesign or been connected to additional support services. What begins as a story can evolve into ongoing collaboration.

Embedding the patient voice in leadership and education

The influence of storytelling at CMCA has expanded beyond frontline teams. Patient stories are now a standing agenda item at Board and Diagnostics Board meetings, ensuring that strategic decisions remain grounded in lived reality.

At one recent Board meeting, a storyteller who is both a wheelchair user and a cancer patient described the physical and systemic barriers they encountered across their pathway. The account was powerful and specific. It prompted Board members to commission a system-wide accessibility review—a direct example of lived experience shaping strategic action.

Patient stories have also informed education. They became the foundation of the 123 Health Inequalities training programme, a CPD-accredited e-learning course developed by the CMCA Health Inequalities and Patient Experience team. Built from both staff and patient voice, the programme uses real experiences to illustrate how inequality manifests in everyday practice—and what professionals can do differently.

As Jenny Brazier, Patient Engagement Senior Project Officer at CMCA, explains:

“Listening to and acting on lived experience teaches us how to deliver better care and improve services for others. When we truly understand what matters most to patients and their loved ones, we create more equitable, person-centred care.”

Conclusion: listening as a safety intervention

In cancer care, success is often measured through survival rates, treatment standards and clinical outcomes. These are vital—but they do not tell the whole story. Safety is also about how patients experience their care. Did they feel heard? Were things explained clearly? Were they treated with dignity and supported during an incredibly vulnerable time?

Patient stories are not just emotional accounts. They are practical tools for improvement. They help uncover risks that data may miss, reveal gaps in communication or coordination, and highlight where systems create barriers or inequalities.

When listening is built into leadership and improvement work, it becomes a powerful safety intervention—helping ensure cancer care is not only effective, but truly centred on those who receive it. 

The Cheshire and Merseyside Cancer Alliance (CMCA) team. 

Further reading on the hub:

• How authentic patient stories can shift systems thinking and improve care
• Digital storytelling: Learning opportunity or reputational risk?
• Catching cancer early: what more can we do as GPs?

Moving beyond asking for views

Consultation is often the default approach to involvement: organisations ask for feedback, gather opinions, and then make decisions internally. While consultation has value, it is not the same as co‑production.

The attached mini‑guide, From Consultation to Co‑Production: A Beginner’s Guide, is designed to help teams understand the difference – and take realistic steps towards shared decision‑making.

Mini guide - From_Consultation_to_Co-Production_A_Beginners_Guide.docx

Understanding the spectrum

Involvement exists on a spectrum, from one‑off consultations through to full co‑production. Co‑production means working with people with lived experience as partners, not simply as contributors.

This blog and the attached mini-guide, breaks the concept down into manageable steps, recognising that co‑production doesn’t happen overnight.

Starting small and building trust

One of the biggest barriers to co‑production is the belief that you have to do everything at once. In reality, co‑production often starts with:

• Small joint projects
• Clear, shared goals
• Honest conversations about roles and constraints

By starting small, teams can build confidence, trust and shared ways of working over time.

What good co‑production looks like

The mini-guide focuses on a few core principles:

• Sharing decision‑making power
• Being transparent about what can and can’t change
• Documenting decisions and learning
• Investing in relationships through regular communication

These practices help move involvement from a transactional activity to a collaborative partnership.

Why this guide now?

Many organisations talk about co‑production, but fewer feel confident putting it into practice. This beginner’s guide offers a realistic, supportive entry point – helping teams move forward without feeling overwhelmed.

When we talk about patient safety, the first things that often come to mind are checklists, protocols, and technologies designed to prevent errors. But there’s another equally powerful, yet often underestimated, element of safety: compassion. 

In healthcare, compassion isn’t a soft skill or an optional extra. It’s medicine in its own right.

Human connection

Compassion fosters connection. When clinicians approach care with empathy and genuine concern, patients feel safe to speak up—about their symptoms, their fears, and even when something doesn’t feel right. I know first-hand that open communication is a cornerstone of safety. There were substantial keystroke errors in my medical record that could have adversely affected my treatment, and only I was qualified to rectify them. Fortunately, the nurse was not only receptive of my lived experience knowledge, but welcomed it.

Many medical errors are caught not by systems or alarms, but by a patient’s voice—when that voice is welcomed and heard. 

From a patient’s perspective, the presence or absence of compassion can completely change an experience. A rushed conversation or a dismissive tone can discourage questions, leading to misunderstandings or missed information that could prevent harm. Conversely, when a healthcare professional takes the time to listen, validate, and explain, it builds trust and trust saves lives. During my inpatient cardiologist’s rounds, he consistently had one ‘foot out the door’. After a few days of feeling dismissed and not feeling heard, I invited him to sit down to answer questions I had prepared for him. Initially hesitant, he eventually complied and sat down every visit thereafter.

The power of compassion… for patients and staff

Research has shown that compassion in healthcare improves patient adherence to treatment, lowers anxiety and pain and reduces readmissions.[1,2] It also increases medical staff’s feelings of competence.[3,4] But its role in safety is just as important: compassion encourages partnership. When care teams and patients see each other as allies, safety becomes a shared responsibility rather than a top-down directive.

Compassion also protects healthcare workers. The culture of safety extends to the wellbeing of providers, too. Burnout, moral distress, and fatigue all erode safety. When healthcare systems prioritise compassion—not just toward patients, but within teams—they create environments where people feel valued, supported, and capable of delivering their best care. Compassion, in this sense, is both preventive and restorative medicine.

Small gestures can ground us in what truly matters

Embedding compassion into patient safety practices doesn’t require grand gestures. It can begin with small, human acts: making eye contact, calling patients by name, pausing to ask if they understand, or acknowledging their emotions before diving into data. These are simple actions that restore dignity, reduce fear, and open the door to safer care.

Patients, too, can be advocates for compassionate care. Speaking up, offering feedback, and reminding systems that safety is not only about precision but also about connection helps drive the culture change we need. Compassion invites partnership; partnership builds safety.

In a healthcare landscape increasingly defined by technology and efficiency metrics, compassion grounds us in what truly matters—the human relationship at the centre of healing. It bridges the gap between clinical excellence and emotional intelligence. It transforms care from a transaction into a collaboration. And, most importantly, it keeps us safe!

References

1. Watts E, Patel H, Kostov A, et al. The Role of Compassionate Care in Medicine: Toward Improving Patients' Quality of Care and Satisfaction. 2023. J Surg Res. 2023 Sep:289:1-7.

2. The Transformative Role of Nursing in Improving Clinical Outcomes and Patient Satisfaction: A Systematic Review. Vascular and Endovascular Review, 2025:8(3s), 101-109. 

3. Ahmed Z, Ellahham S, Soomro M, et al. Exploring the impact of compassion and leadership on patient safety and quality in healthcare systems: A narrative review. 2024. BMJ Open Quality, 13, e002651.

4. Tehranineshat B, Rakhshan M, Torabizadeh C et al. Compassionate Care in Healthcare Systems: A Systematic Review Journal of the National Medical Association. Journal of the National Medical Association. 2019:Volume 111, Issue 5, Pages 546-554.
 

More blogs by Risa

• The power of being heard in healthcare

• When lived experience is embedded at every stage of research

• Women’s heart health - a patient safety priority

• Why the patient voice matters when things go wrong
   

The scale of the challenge: why inclusive communication matters for children

Health inequalities in the UK are a persistent crisis, costing the NHS an estimated £4.8 billion annually in avoidable hospital costs alone.[1] Patients in the most deprived areas live nearly a decade less than those in affluent regions, often enduring fewer years in good health. When we narrow this to children and newborns, the picture is even more alarming.

Consider the evidence: non-English-speaking mothers face a 25-fold increased risk of maternal mortality,[3] directly impacting newborns. Black women are nearly four times more likely to die during pregnancy or childbirth compared to white women, with poor communication frequently cited as a contributing factor.[4] These risks extend to children, where misunderstandings can lead to delayed diagnoses or mismanaged care. For instance, unreported or misunderstood symptoms in maternity settings contribute to 55% of stillbirths linked to undetected foetal movements.[5] The NHS allocates around £75.5 million yearly to interpreting services,[6] yet the true demand could reach £250–£300 million, underscoring how under-resourced and fragmented our systems remain.

In paediatric care, where children's voices are often mediated through parents, these gaps can result in higher readmission rates and preventable harm, perpetuating cycles of inequality from the earliest stages of life.

The challenges for parents, children and staff

For parents, navigating healthcare for their child amid language or accessibility barriers can be isolating and terrifying. Imagine a non-English-speaking parent trying to convey subtle changes in their newborn's behaviour, only to be met with confusion or reliance on ad-hoc solutions, like family members translating. These are methods that often introduce errors and breach confidentiality. Children themselves, especially those with cognitive or hearing challenges, may struggle to express pain or discomfort, leading to overlooked conditions.

Healthcare staff face their own challenges. Time pressures in busy wards mean interpreters aren't always available promptly, forcing reliance on gestures, louder speech or generic online translation tools that lack clinical accuracy. This not only heightens the risk of misdiagnosis but also erodes trust, contributing to inefficiencies like wasted appointments and increased litigation. In essence, exclusive communication creates a vicious cycle where staff burnout rises, parental anxiety escalates and children's safety is compromised.

The safety benefits of breaking down communication barriers

In my opinion, prioritising inclusive communication provides transformative safety benefits. By ensuring information is accessible through multilingual resources, simplified language or sign language, we empower parents to report concerns early. This enables timely interventions that prevent deterioration. For children, this means fewer neonatal readmissions and better management of chronic conditions.

Tools like CardMedic demonstrate how barriers can be broken down effectively: offering pre-scripted clinical dialogues in multiple formats, it supports immediate, accurate exchanges when live interpreters are unavailable. Integrating such approaches aligns with legal standards like the Accessible Information Standard, reducing risks and fostering equity. The result? Measurable improvements, such as early detection of issues in maternity care, lower stillbirth rates and enhanced patient satisfaction, ultimately redirecting resources to frontline services.

Tools for a safer future

To truly advance safe care for every newborn and child, we must embed inclusive communication as standard practice, not an afterthought. This requires a cultural shift: training staff to default to accessible tools, investing in hybrid solutions that blend technology with human support and tracking outcomes to prove the return on investment. Innovations that bridge gaps in real-time exemplify how we can dismantle these barriers, supporting better safety and outcomes for children. On this World Patient Safety Day, let's commit to a healthcare system where every voice, whether it’s a parent, child or clinician, is heard equally, turning potential tragedies into preventable successes.

References

1. Asaria M, Doran T, Cookson R. The costs of inequality: whole-population modelling study of lifetime inpatient hospital costs in the English National Health Service by level of neighbourhood deprivation. Journal of Epidemiology and Community Health. 2016;70(10):990.
2. The Health Foundation. Major study outlines wide health inequalities in England, 15 August 2022.
3. National Register of Public Service Interpreters. Hear Me, April 2024.
4. Birthrights. Systemic racism, not broken bodies An inquiry into racial injustice and human rights in UK maternity care, May 2022.
5. Sands. Stillbirth study investigates fetal movements in pregnant women, 28 September 2018.
6. NHS England. Community languages translation and interpreting services, December 2024.

Further reading on the hub

• CardMedic: Empowering staff and patients to communicate across any barrier
• Improvement framework: community language translation and interpreting services
• Blog - 12 tips for communicating with deaf patients

Opinions expressed in blogs and other content are those of the author. Patient Safety Learning welcomes sharing content and opinions that promotes safer patient care and for the reduction of avoidable harm.  The views expressed on the hub however do not necessarily represent Patient Safety Learning's views or values. References to a specific product or service does not imply a recommendation or endorsement.

Who has been on the receiving end or witnessed unhelpful comments like these?

“There's nothing wrong with you.”
“This condition is awful. There is no way it can improve.”
“There's nothing wrong with your knee [or other body part]; the X ray/scan/investigation is normal."
“The evidence states this is the best option.”
“The evidence is...”
“You're too fat/your body mass index is too high.”
“You're too young/old to have this treatment.”
“You need this operation [or treatment].”
“There is no point considering that [other treatment option].”

Some of these statements will produce the following feelings:

• That you are being fobbed off.
• Your symptoms and emotions are being ignored.
• You are railroaded into one type of treatment, perhaps against your better judgement.
• You feel disempowered.
• You may feel humiliated.
• You may feel confused, especially if you’ve done some research and the healthcare professional has a differing view.
• Usually, later on or occasionally at the time, you may feel anger.

But that’s not all. In addition, other consulting problems may arise:

• Over focus on one diagnosis when several might be in play.
• Mistaking an underlying condition as the principal cause of a given problem rather than a contributor or co-factor or vice versa.
• Loose use of statistical terms, such as “this will make you significantly better” or “this treatment statistically has the best track record”. The use of the word 'will' is potentially dangerous as it implies a presumption of success that is over-ambitious. Similarly to 'need' a given treatment is a highly specific term that effectively excludes all others.
• Confusion with the type of diagnoses being outlined—definitive, working, differential.    
• Likelihoods versus the balance of probability.

Why do people speak the way they do?

This is a question that would fill a reasonable-sized text book. However, briefly,  the way people speak is:

• Personality type.
• Emotional state.
• Cultural norms and differences, including differing power distance indices—i.e., the degree of structured hierarchy between individuals.
• Subject knowledge.
• Environmental stresses.

These factors interact and have enhancing effects on each other to produce a consultation where the communication quality can range from fantastic to terrible and unhelpful.

Environmental stresses

The key environmental stressor facing most healthcare professionals, most of the time, is time.  In the modern healthcare environment, time is at a premium and this has an impact on the clinician–patient interaction .

Here is an example of some of the key elements of a clinical consultation:

1. Discussing the patient’s medical history.
2. A physical examination.
3. Special tests—e.g. X rays, scans, blood tests (if available), then interpreting them in the context of the history and examination.
4. Review of test results, producing a diagnosis, working diagnosis or differential diagnosis.
5. Explanation of the diagnosis, particularly the prognosis concerning symptoms and any loss of function. Folding in the interactions of relevant concomitant diagnoses.
6. Outline treatment options, including the success and complication rates of each, ideally tailored to the individual’s diagnosis, symptom severity, functional loss and other relevant conditions.
7. Confirming a mutually agreed management plan.
8. Allowing time for the patient to ask additional questions.

Reducing consultation time can be a mark of a highly experienced clinician who has seen many such cases before, having a set of well-tried shortcuts to establishing a diagnosis and management plan. However, it could also be a clinician in a hurry simply shaving off key elements of the consultation. For any given clinician–patient interaction, it could be both.

Time pressure or impatience can lead the clinician to rush a consultation and increases the likelihood of them using unhelpful language.

For many conditions, this may have little or no effect on the successful outcome of the consultation; however, this isn’t always the case. It is particularly relevant if something goes awry with the diagnosis or the treatment.

Complexity science

There is another reason too, and that is how practitioners and the wider healthcare community deals with complexity.[1][2][3] In my opinion, traditional experiential wisdom has been replaced by data-driven knowledge, which for many practitioners is the bedrock on which decisions are made. However, there are flaws in the over-reliance on evidence[4] and, if this is combined with heuristics and confirmation biases, this may lead to over-confidence from some clinicians. I use the term hubris (“excessive pride or self-confidence”) for this type of behaviour. If we go back to the start of this article and look at some of the unhelpful comments, they can be recognised or defined as hubristic.

In order to visualise this a little more easily, I think of a consultation along two axes to create a ‘compass’ of clinical consultation (see diagram below): humility and hubris on one axis, and data and wisdom on the other axis. Ideally the ’good‘ clinician should be aiming for the top right corner.

However, I fear that not only individual clinicians, but entire departments, divisions and even health systems, often adopt the dominant type of behaviour shown in the bottom left corner of the compass. 

Concluding reflections

While in modern healthcare the expectations are set high—that the language we use as healthcare professionals in our communications with patients, relative, colleagues and co-workers is kind, caring, compassionate, empathetic and, at times, sympathetic—this isn’t always achieved.

The reality of modern medicine is that there may be case complexity; however, nonetheless, patients are quite rightly expecting timely and appropriate care, with clear communication of the problems and treatment options. From a patient perspective, it is important that the key objectives of the consultation have been achieved to a satisfactory fashion and, if not, that they seek further information, which may take the form of specific questions to the clinician, another consultation or, ultimately, another opinion. However, in a time-poor world, this may be easier said than done.

References

1. Hofstede G. Culture’s Consequences. Comparing values, behaviours, institutions and organisations across nations. Sage Publications, 2001. Describes the power distance index, sometimes described as Hofstede’s Dimensions
2. Elsorafy K, Macharoub A, Deo S D. A simple classification of clinical complexity in hip fracture patients which predicts clinical risk and mortality. Open Journal of Orthopedics, 2014; 4: 137-43
3. Deo S, Prada S, Alaraby Y, Elsorafy K. Application of complexity science principles to clinical orthopaedic practice (clinical complexity). Implications for all healthcare stakeholders. BMJ Leader Suppl 2019.
4. Deo S, Gill H, Akehurst H, et al. A Grading of clinical complexity based on local and systemic factors demonstrates pre-operative differences with longer operating times and length of stay in knee replacement patients. Open Journal of Orthopaedics, 2025; 15(6): 193-207.

Related reading on the hub:

• Providing patient-safe care begins with asking and listening... really listening!
• “Listening to a patient’s history for longer can help doctors make the right diagnosis”
• Clarity and the Art of Communication for Patient Safety

Further content from Sunny:

• Using data to improve decision making and person-centred care in surgery: An interview with Sunny Deo and Matthew Bacon
• One size does not fit all. How AI and better data can help us embrace complexity in diagnosis and treatment

The report highlights five key findings: 

1. Patients get involved because they want their experiences to be heard and to make a difference for others. 
2. While payment isn’t the main reason most patients share their experience, it helps to increase participation, especially for those from marginalised and underrepresented groups. Fair payment shows that their experiences and contributions are valued. 
3. Good involvement treats patients as partners. It values their contributions, ensures that their voices are heard, and keeps them informed about how their feedback is used to improve care. 
4. Poor involvement feels like a box-ticking exercise. It excludes patients, ignores their contributions and lacks transparency. Patients may feel dismissed and never see the impact of their input. 
5. Inclusivity matters. Involvement opportunities should focus on being accessible to all by addressing barriers, be they social, cultural, physical, financial or other. If only certain voices are heard, services may overlook the needs of marginalised and underrepresented groups, worsening health inequalities. 

Based on these findings, the report makes five recommendations for organisations to build into policies and principles for patient involvement: 

1. Ensure guidance on reward, recognition and remuneration is holistic.
2. Prioritise inclusivity and accessibility in patient involvement to tackle health inequalities.
3. Emphasise the creation of safe and empowering environments for patient feedback.
4. Strengthen patient partnership in practice and champion its adaptation across systems.
5. Simplify processes and minimise barriers to patient involvement.

“We are our biographies. Seeing ourselves and each other as unique human beings in the face of challenges should be an important part of clinical practice, but it is missing when the individuality of patients and health professionals is pushed aside.

“Perhaps it is not by chance that the idea of allowing patients and doctors to introduce themselves this way arose in a surgical ward, where technical competence and formality of the setting may feel detached and impersonal. Sharing biographies has shown us an accessible and effective tool for establishing better connection and care.”

After a discussion between the facilities’ patient safety officers and Patient Safety Authority advisors, it was discovered that these patients had a known medical condition but did not disclose this on their medical history form because they were worried that their procedure might be cancelled. In these cases, these preexisting conditions would not have necessitated cancellation, but their course of treatment would have been modified to prevent the complication and, in turn, the transfer to a higher level of care. Other event report submissions describe procedure cancellations due to an active infection, which the patient did not initially disclose to avoid the cancellation. Each case involved sensitive topics and procedures, which may have led to patients withholding information.

Partnership-focused frameworks and other literature on PPI and co-design informed the guiding principles. The structure included a five-member PPI group who provided continuous input, and an additional 15-member PPI group who met twice to discuss experiences of obstetric emergency. PPI in the co-design processes shaped the development of the resources in multiple ways, such as strengthening the prominence given to listening to those in labour and their birth partners, ensuring inclusivity of visuals and language, and developing communication princi ples informing all resources. Feedback suggested that PPI members felt valued, listened to, and supported to provide unanticipated contributions.

The case study demonstrated how a principled approach to PPI enabled service users to play a key role in co-design of clinical resources aimed at improving the quality and safety of maternity care in the UK. Further case studies, across different clinical areas and with varying levels of resources, are needed to validate this approach.

Patients are much more likely to entrust their care to clinicians who have listened, truly listened, to their concerns. This is key to providing the highest quality of care and caring. In 1988, the Picker Institute coined the term patient-centred care,[1] calling on clinicians to focus more attention to the needs of patients and family members instead of focusing more simply on diseases—a more humanistic approach to collaboration in healthcare.

Providing patient-centred care requires thorough, clear and compassionate communication between providers, patients (and family members where appropriate) in order to secure the collaborative framework for success. Success should certainly be related to the outcomes that each patient desires.

Miscommunication between clinical staff and patients (or parents/other care providers) may lead to errors and subsequently to harm, especially when implementing treatment plans that take place primarily in patients’ homes. Thus, it is essential that clinicians communicate with patients competently, compassionately and empathically; and communication begins with listening... really listening! The concept of patient-centred care was further elaborated upon in the seminal report, Crossing the Quality Chasm in 2001.[2]

In 2012, Barry and Edgman-Levitan published a perspective paper, Shared Decision Making — The Pinnacle of Patient-Centered Care, which, for the first time, suggested that clinicians “need to relinquish their role as the single, paternalistic authority and train to become more effective coaches or partners”.[3] Clinicians shouldn't just ask “what is the matter?” but, as importantly, “what matters most to you?”.

Collaboration between patients and clinicians requires that patients be encouraged to share their views of their health and wellbeing, and their desired outcomes from clinical interventions and recommendations. This includes and extends from medical and surgical interventions, designed to improve clinical outcomes and functionality, all the way through to exercising end-of-life care options. What matters most to patients must be considered in care planning and is the quintessential element of patient-centred care and collaboration.

Listening carefully to patients goes way beyond simply talking with patients, which all too frequently translates to clinicians obtaining brief histories of symptoms without really appreciating the depth of patients’ concerns. Sometimes, especially if we are very busy, clinicians actually spend too much time talking 'to' patients, without really delving deeper to understand their concerns and/or their depths of understanding of the issues we need to consider. As far as I can recall, I was never taught in medical school or during post-graduate training to listen to patients. Instead, I was taught to gather information in a systematic way without asking questions, such as “what matters most to you” or “what is frightening you today?” or “what concerns you most?” or “is there anything else you would like to share with me today?”.

If we don’t have the answers to these questions, then we may miss opportunities to provide the best possible care and to achieve the most desirable outcomes from the patient’s perspective. What matters most to patients serves as the directional signpost for the doctor/nurse–patient relationships and we need to stay in this lane.

To achieve what matters most to patients, the process of providing care begins with each patient explaining their concerns and the clinician listening in a compassionate and empathic way. This involves more than clinicians just hearing what patients have to say, but also with clinicians observing each patient’s body language for subtle clues that can be very revealing. Listening is both an auditory and visual function in my view.

Finally, the best way to solidify collaboration is to treat patients respectfully and help them maintain their normal lifestyle, if it will be safe to do so. However, this may present challenges both for patients and clinicians. I would like to share the following case study to illustrate this.

A case study

A number of years ago, I was evaluating a young athletic woman, Karen (not her real name), for profound bruising and nose bleeds resulting from moderately severe thrombocytopenia (very low blood platelet count). It was clear after several diagnostic investigations that she had autoimmune thrombocytopenia where the body produces antibodies against its own platelets, and these are destroyed primarily in the spleen. At this time, the approach to care had been observation alone for a period of perhaps six months with oral steroid support, if necessary, to boost the platelet count to prevent bleeding, followed by splenectomy (removal of the spleen) if the thrombocytopenia persisted.

Karen did not want to take steroids, even though these might have elevated her platelet count to a safer range. Steroids are associated with weight gain and acne and she did not want to experience these side effects. Her platelet count was sufficient enough to prevent really serious bleeding, so I agreed to avoid this as long as she promised not to engage in rigorous physical activities. I had a long discussion of the risks and benefits with Karen, and she agreed with this plan. After a period of two months, Karen’s platelet count remained stable although still quite low, and her bruising had subsided a bit as had her nose bleeds.

One day Karen came to see me because she wanted to play in a tennis tournament, at which point I said clearly, and with great sensitivity, that I felt that was very risky and that if she fell or was hit by the ball she could be seriously injured and possibly even die. I needed to be very firm about this, though I did so in an empathic way as I could relate to her frustration.

I had an uncomfortable feeling that Karen might play in the tennis tournament regardless of what we had discussed. So, I told Karen that if she were to agree to take prednisolone every day, and if her platelet count rose substantially on this regimen, then I would—though with some cautionary reluctance—endorse this approach, but that she was to seek emergency medical care for any injury, immediately!

What mattered most to Karen, playing in the tennis tournament, was potentially dangerous, but I was concerned that she might simply go ahead and participate anyway, with her platelet count dangerously low, even though I had advised her against it. This was a tough situation to be in... for Karen but also for me.

Karen started the prednisolone and her platelet count rose nicely to a safe range over a one-week period. All bruising resolved completely and she had no nosebleeds. Karen participated in the tournament. However, about a week after the tournament, and while slowly tapering off the prednisolone, Karen was involved in a car accident and banged her forehead hard against the steering wheel and the front window. She had not been wearing a seatbelt.  

Karen was rushed to A&E, fully conscious and feeling ok. Her platelet count was below normal but not dangerously so. She was miraculously not seriously harmed, though of course she was quite frightened.

I kept Karen on prednisolone, began tapering again after one week, and we had a long heart to heart talk about her risky behaviour. Her car did not have functioning seat belts and I had forgotten to ask about that. She promised me she would not perform any risky behaviour after another very empathic and firm conversation.

As Karen’s thrombocytopenia did not resolve by the end of the six-month observation period, I referred her for surgical removal of her spleen, which went smoothly. Two months after splenectomy her platelet count was just below normal, and in a very safe zone, where it remained for the next two years before I lost touch with her.

Conclusion

Providing patient-safe care is all about collaboration, about partnering with patients for best outcomes while incorporating what “matters most to the patients” if at all possible and with safety assured. This collaboration begins with listening to patients, really listening to them. Patient-safe care must be patient-centred care.

References

1. Gerteis M, Edgman-Levitan S, Daley J, Delbanco T. Through the Patient’s Eyes. San Francisco: Jossey-Bass, 1993.                        
2. National Research Council. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academies Press, 2001.
3. Barry J, Edgman-Levitan S. Shared decision making — the pinnacle of patient-centered care. N Eng J Med 2012;366:781-782.

Related reading on the hub:

• “Listening to a patient’s history for longer can help doctors make the right diagnosis”

Further reading on the hub from Dan:

• Clarity and the Art of Communication for Patient Safety
• Late night reflections on patient safety: commentaries from the frontline (2014)
• Patient safe care as a moral imperative: The mandate of medical ethics
• Diagnostic errors and delays: why quality investigations are key
• Patient Safety Spotlight Interview with Dr Dan Cohen, Patient Safety Learning Trustee
• Structures, processes and outcomes for better or worse: Personal responsibility in patient safe care
• What does all this safety stuff have to do with me? How one professional’s arrogance led to new insights
• Interview with Dr Dan Cohen on human performance

• Half of adults in the UK are struggling to access trusted health information.
• 1 in 10 adults in the UK have been affected by misinformation, rising to 1 in 5 for ethnic minorities.
• 8 in 10 adults in the UK agree access to trusted health information would help them manage their health. 
• 1 in 6 adults in the UK say their views are not taken seriously by their health professional. This rises to 1 in 4 for ethnic minorities. 
• Only 1 in 10 adults with long term conditions in the UK are signposted to patient organisations, yet these are highly trusted by their users.
• 2 in 3 adults in the UK state independent verification of health information would increase trust.

Recommendations

Knowledge is Power makes five recommendations on the right to health information, aligned with the three shifts proposed in the NHS 10-year plan. In summary they are:

1. A right to health information – Health information is provided as a core part of patient care.
2. Tackle misinformation – Through robust content standards and effective signposting of credible health information via health professionals and the NHS Apps.
3. Tackle inequality – Health information must be accessible and appropriate for all.
4. Lived experience as a metric – Embedding patient experience as a measure of NHS performance using the NHS Apps and single patient record.
5. 5. Dedicated leadership – A mandate for the effective delivery of health information with a named lead in all NHS organisations.

1. Real-time feedback is a useful tool in patient- and family experience reporting as it provides an opportunity for in-the-moment service recovery.
2. Partnering with current inpatient information technology is a cost-effective way to solicit real-time feedback.
3. Existing technology can be leveraged to administer survey questions and then provide immediate, automated notification of a report of poor experience to key stakeholders.